0ctober
Letter to the Read.ers: Ili! Thj-s zine is
a prod.uct
that
3s 2015
thought ofp but never executed. I've always adnired zi-nes1 but due to the linitations of ny CP hands I've never mad,e or?eo Sol at age 511 with the help of ny fli.end; Daniela 0apistra.nol f an making ny zine naker dreans qone was longe
true.
.
.
:
I have provided Daniela with a1.t of the content; wâ‚Ź had long conversations about my vision; and f directed how I wanted everybhing 1a5-d out. This is our attenpt at an "interdependentl accessible zine."
(Note:
I acknowledge that it is not perfectl and I
want feedback). The fol-Lowing pages include poetry and short essays fron inportant moments in ny liJe' These moments involve coming to terms with ny dj-sabjJ-ity and sexuality as it intertwines with my identity and ny need for intinacy. This zine does not include page numbâ‚Źf$' Ratherr oII the botton right-hand corner of every page is ny age when the piece was created.
turn the page and happy (or not so happy) reading inside my head... Sol
Ashley
QUESTIONS When They cu{
f
wos bern
"fr"y{ingor
fn {hrs (hotr
f
I
olrnosl died
which r"ode me <ry
hove 1o be doy ond ntgh{
un{l
I
elceP
And Un*il {h<r} sPeciol doY
I was 10 or IL, and By grandnother Those are the only lines taken fbon ny first poen that I renenber. you faced such adversityt you're posted lt up on her fbidge with prlde. she used to say "even though word adversity. But it alj- neant the gaBe' Buch.a good writer.' Except that ny grandna did not use the now that it was a poen written she thought it ras eo beautijlll - everyone didl to be honest. I think do you feel? with so nuch pain and no one ever questioned it1 not €v€r oDCeo No one ever saidl "IIow proof of thatl nean to you?" I',n U"ving 11hat would nake you feel better? lthat did'one special d,ay' you knorl it,s these questions that would have been so helpl\I. It's the questions that I wish I would was going tbrough bouts of have gotten. It,s theee questions that would have helped when I ne" Jbon ny parents' Thoge depresslon - instead ofthe aporogies of "r wish it could have happened to to glve ne conplinents - but were the statenentE that hurt the nost. I think ny fanily always neant I thought that I they were never taken that way. At 1eastl not in ny chjJ-dhood or teenage nind. thatr no one would couldn,t control ny body but I cou1d, control ny nindl and as long as I could do see it. The wheelchair ever would No one ever pay attention to the fact that I sas in a wheelchair. when r rrae Little' rcatched I wourd kind ofbe }1ke being one ofthose ghosts on sone ofthe cartoons
be a balJ-erina' Not an adaptive r was even in such denial about my inpalrnent that I thought r eould wheelchairE could danee as welJ- - r ba}Lerl,na - because r didn't understand then that people ln ofballerj'na that woul-d do a thought I could one day be the standlng on your tippy toes ttr1pe woutd be a cheerleader and that r would be at the top ouoi"tt". I also thought at a young age that r assoclate with ny disabiJ-ity. r would not go to any ofthe pyranld. For a long ti.nee r did not even participate in any dlsabillty special eunner canpg for chiJ.dren rith disabjLlties. I sould not sporting events.
"Lttt"a
tornz and r was the onry one r knew with a physical disabiJ-ity. so it was hardl pick up ny chaS-r at any monent's notlce so that we even though ny fliends were the best. They would so, I had no reaBon to eee ny disabiJ'lty' could go out and go to shows or go anlrnhere that we saw fit. cP didn't exlstl it Just didn't exj"st' At the tinee it was a great coping nechanlsn. rfr pretended sayr $oe 5"fI could rrite a letter to nyselfl l rou1d *tttLEv
r grew up ln
a snal-l
ta Yo* ots*xtt;tw roel, a45T. u f6 fne ,rnlYl$e a**t?'!r. cra T6 tuot€ t?&ntb Ew'tt"!' u flE lo coaP/rEt ,to'fylr/lb NrfuEE WtEeE tav chtt nF;cr ala?ls wtfu D,taatLtnet . EEcAvts Ltt'tftAnar'!' ?afi'6't wuo t)h'tue l/,vafra,s m c6tt rilcn.,$ v6v u^t L aatD ''AnE 'ytfi'ruEa 'fillw'f't ufrY]?A w$1. l6v t?,"E Tuofr yov ttne.f tt6u, t6v wavLDtt? tc rzvtna to Dttftovae urna Yov AE hltl '4 ciiitr',u'stnulnlr ea'rrgr;n Luce ruat AE confttqer,r, ND lrv't u(u tT'd,A 2aLL tilot tC aflcAuftlov Agt ettovatL
Fl'tu
tF
,/ )
t
INTIMACT You asked Bâ&#x201A;Źr "Do You need helP?"
I hesitated I paused and said guiettyl "Tes"' The whole tine thinking, *You can't be serious.'t
ever asked, me about anything sexual I've been ljJce a saintl angelic' put a towel on the bed
No one has
My tools on an end
table
FuILY haked, No one
hearing
No one
creePing
Reina on ltunes as loud as can be
I
CeSJPhone in reachr 100ked around as I heard. the door close Toy vrbrat:.ng rn nY hand
as a tear ran down nY cheek ny needs as awkward as this was solneone cared for She saw me as I let mYself go a gate was oPened
an opportunitY
This was intimacy
FrU.C.K. Don't touch
nep
unLess you
My
nev nantra
rant to fuck
nean lt the gentle way llake ne feel sonething
lnd I don't
"But f'n ajlaid to hurt you" ilhat hurts ls that fucklng 1lne See peop3_e have
never been albald to touch ne Pat ne on the head Ose ne as a toy to shake, lltere'l I y Not
ln the sexy say elther
alnost feel oblilgated to dio thJ.g nerd 5$ oe Fants to do a social experlnent They
The The See
strong ronan in ne says back the f\rck up
the touch I yearn for does not see the ,.brave disabled Not even ronan because in those nonentsp f an not a rronan to you.
touch f yearn for Is firery red nakes ne qulver llosr sJ"thln fle nesh Ilke a wave coJJi&ing together The
It
"Hey buddy"
"She's ny
LJle it's
fllend"
fucklng badge on your scout's unJjorn a
lnstead f\rck ne Throw ne on the bed
Enbrace 6e Fuck ne LJ-ke te're
not going to see the sun tonorrov Touch ne
"Isn't
she
the
glrl
that researches dlsabjllty?" "She's 1n a rheelchalr" 'She's so brave"t
"She's gettlng a Ph'D.o
That
ls not who I an'
"Iou have the biggest fan club" Are they njlLing to nake ne yearn to screan? Are they golng to explore ne lnslde and out? Ies;
pJ-ease
touctr ne'
Fuck ne
"Iou're
ao
cute,"
'You look so 1rouo$."
"Iou're so haPPYn " 'Iou }ight uP a roor" Iou don't knor nâ&#x201A;Ź' I'n not breakable Klss ne toP to botton Fllp ne inside and out Now rrhat do you thj-nk of ne? I have a new nantra
fton
Jugt fbck ne..'
girl"
SEPARATE Take the touch Run with it Don't get too attached' Touch doesn't nean love SeParate Oare; touchl
intinacY
neld together AIL gloss over
AIJ-
SeParate MY
bodY
is not a
ofthe Private It'saPlaceladore
Place
But a Place not of nY own SeParate
My body
is a place you once touched with desire
My body once
Most days ny body
So;
so
I
quivered under your hand but
is forced to be jn j.ntinate sltuations Not ones ofdesire
I foree nyselfto separate
can have sonethj.ng of ny own A hone
ls intoxicating liberating Desire
validating But
it
in snall dosages I take it in like water onl-y cones
Li*lce
air
Ljlce I'n suffocating Separate...
Ifhat is Aceess intimacy? Access
intinacy is a tern coined by Mia lllnus (?011)1 and f take no oredit for her brj r I iance. llowever, I an hoping to add insights into the deflnition of access lntlnacy 1n hopes that lt wJJJ" continue to grow and dLourj.gh. Access
sone of ny
intlnacy makes me sniLe lYon lnslde out. It nales ne breathe a llttler or naybe a lotp 1lghter. It cones 1n snat I end unexpected nonents that nake the biggest dLff,erences. It doesn't usualJ.y cone in the nonents where soneone thlnks that they are neetlng ny lndlvidual needs.
Access lntinacy cotses in the nonents when I cal'l ny "best dlsabled fliendr" as she lJ-kes to cpl t herself, to vent about ny day or ny personal care attendantsl and I don,t have to exptain ny feellngs because she already knows how I fee1. More ofben than notv she has been 1n sinJlar sJ.tuatj.ons! She knors exactly hor f an feellng, sonetlnese r experienee thls {::1ite rith peop}e that I never net. Recently, rhen I nas readlng a piece wrltten by Andrew Morrison-ourza (p0Lb) a chj-lL ran down oy splne. In hls piecel he vrites about hor he feels and g'l 1 lhs conplex and conpllcated thoughts that float around in his head every tlne a lover questions, "Oan you fee] that?" In this short pi.ecel he explores how liberating a sexual experience rlth a partner can be. lle deseribes how once the question io posed., he gueatlons. ' shether his partner sees hln as a viable choice. By the end of the piecel tearg were Btreaelng down ny face becauae I,ve felt this saoe exact feeling before rn'ith every inch of ny being. r never net Andrer before readlng this postl but I felt lj.lce we had a laetilg bond; a feellng of coofortabiJ_lty,
-Access
lntlnacy cones when a frlend plans out a trlp for us1 and I can relax because I know thet she ri.l 1 6sks sure that n]'l 6y nss69, both ny physical and nental needsl are net. For lnstancel I an a planner. I rnake ltinerarles and I plan out everythlng to the tee. Horveverl when planning for ny upconlng tripe ny tbiend, MarJ.a, saldl .,I'JJ take care of,the detajLs." A big part of ny ranted to take control of every thing, but dy heart knows that ehe understands ne. She knows ny physical needsl but she also knows ny nental needs such asr ny not llJcing large crowdo because it nakes ne feel
uneasy.
intiEacy cote rhen a lHead helFs ae t{v up ny rorkapace s'ithout ny having to ask; becauoe 6he knorg tt help allevlate the chaoe 5-n ay braln. l[onents of aceegs intlnaclr eone *hen f]lentls caLl ne1 and oayl uI figureJ 'jal n", to do a1 b, and cl and I thought it nlght rork for you as rreLI.n {lthoughr sone of these exanple aay seen snal I 1n ""t s5.ze they are big in meaning' Theee actlons are aore than helping ne conplete tasks or aotlvlties. These nonentg J.nvolve a "true' connection betreen peoplel and the8e connectlons lnvolve a posltive euotlonaL reBponse either shown as an outrard display or as an lnsard feeling ofhapplness anVor peace. Accegs
colJeague of nlne recently chal r enged ny deflnltlon of accegs lntfunacy. she questloned. the dJlference between one of her attendants knowlng her routlne or have a qbody nenory" and experlences ofaccess intlnacy. I{aving attendants, nyseLfr the dlfference lies in these questlonst Does ny attendant understand rhy I llke thlngs done in a certaln ray? Do they underetand the enotlonal inplications behind your routine? Ifthere is an enotlonal under-layer beneath the physical actt then you nay be erperlencJ-ng access jrrtloacy. Ho*everp no two scenarios play out the Eane. Let ne give you an exanple. I have tro fuIl-tine attendants that botb knor thd ends and out ofny da5J.y The only dlflerence betreen then as attendants 18 that I only erperience access lntinacy ylth one"orrttn". of then. Attendant .[ does whatever f askl and she only needs ninlnal directlon. The sane thlngs apply for Attendant B. Hoveverl lttendant B understands rhy r f-ike ny clothes sorted in a certain vay and rhy I like ny food sorted in a certaln ray. she has taken the tine to knorr neq and 3he aBkB questions when Bhe doesn't understand. she provid.es ne tips for 5"ndependences and we have taken the tine to learn the ninute intrlcacles of our bodlee together. 'ille are developing an intlnate relatlonship based of,access on a ciaily basis. A
llylthln bLogsl access intinacy cones ln the forns above nentlonedl but it goea a l1ttre deeper becauge nost ofthe blogs I I net face-to-facel unliJ<e1 nost of the Btorj.es thst I nentioned above. As M1a Mingus (Ao1I) polnts out, access lntlnacy isr an "elusivep hard to descrlbe feellng when Boneone else "gets" your access neids', and a sense of "confort that your lentlre] disablecl self feels." Access intlnacy involvcs concrete ways to get ones needs netl but lt nust also include a nonent offeeling oat honeu wlth the other person and,/or people rhetherp physica[y or vlrtually' Bloge have a ray ofbrlnging acceas lntlnacy lnto the publ-5.c eye at a larger scale. As one bloggere Mortensen (2004) rrites, "To post onLine is to declare that you are part ofsonethlng larger, even Jfthe post is Just ln order to whlne about dinner or about havlng lost a boylbiend." Within a person's b].og postl the reader can see the person,s story unfold on the conputer screen. Access intlmacy happens rvhen you read a blog postl and you get a sense of..I,n not the only one". If's a connon understanding or a connon bond. Tlne and tlne agaln these nonentg caused. an enotlonal stir in oe naklng oe cry tearo ofJoy and happlness. read are not by people that
a person f,eel a1onel lnferiorl or lllce a burden' If In those Those nonents or lnstances of access Intinacy never nake are feeling any type of negative enotlonl you are not nonents of accegs (i-.e. physi.cal &ccâ&#x201A;Źee1 Brailie, lnterpreters)e $ou llonents wlren BoBeone has ofrered to csrry tre up a ,cc"ss lntin"cy. Accees intJ-nacy has never eode J.n tie
experlenclng
ftlghtofstepsinorde'togotoapartyortoattendayogaclass.Inthosenonentsllfeel.strangeandoutofplacâ&#x201A;Ź' I do not experlence access of any klnd' Ir honest\y' feeL guiat lt feels to have your forn of noblJ"ity pull-ed out fYorn underneaththat explaln the nogt relJ"-intentloned person doesn't get Lt sonetines' rt is hard to you, literarly. r,ve triedl boi ls hard to It ofpeople' a roon a:lL "o"n even ln and lsolatedi alone I feel wlthout the ability to control rny oovenent the e1 1 eviate these feeilnga. Most lnportantlyl ndklng explaln that people "pushing you,, in your nanual chajr doeen't rt is tears' to ne brlng that nonents are these the problen. soBetineer event .eccessible for ile,, does not aneliorate the is it becauee to otherrl access intlnacy explaln do not tlne, I ofthe nost those nonents that hurt the nost. sol you feel that? rou get ltl Not uany peopLe do.''Those sonethlng that r roulcl have to stop in the [onent, and sayr "Do have the ternlnorogyr you knor it's there' rt's u}e the don't Even lfyou raouents eabody the concept of access intinacy.
because 1 feel at a 1os3 for tords. In those monentst ho* because r can never expLain quite werl-enough
wind; even thougbl you can't see Accegs
intlnacy
lt;
you knor JJ's there'
another. sonetlnes, accese intinacyr neans agking does not have to dean havj$g the sane care needs as udon't kno$"' one of, tlre greatest present ln the tearntng experlencel anit aituittlng that you
the rlght read the book or a"ticle beforev read lt rltlr a lbesh nlndr lessons that rve learned tlon a prof,essor waes "Even fyou }lfe rlth a "lYegh nlnd" can create access intinacy' Three tine.'tpproacbing becauge you r5JJ learn sonethlng new egch and .the three rocis that ground nel" d'o not have any type of phyolcal disabiJ'ityr of ny best ryiendo, r llke to carL then f,lth lntlnacy ofaccess nonents Hoveverr I share palsy ne. *""iing before none ofthen kner anythlng about 0erebral are quich to carL ne wlth "tlps" for lncreaslng ny then alnost every tiie that I an around then. rll- three ofthen thier "r ras doing ---* and I thought you nlght find lt nobllity and lndependence. Their stories usuarly start offLll<e gtorles are not always about helping ne to conprete a task' a8 lFe11.,'These conversatlons or questlons, being
, -
easler to do ___* this ray
Theyarea].soaboutnerperspeetivesandknorledgegelne.lthroughnavlgatingtherorldrrlthne.Forinstancelny f}lend,sara'recentlybrokeherlegandshewa"teulngnehol[golngthroughthewor}dwithmelandherhavlngto nechanlcs ofher body 5rr transitlon. Through nonents of break down niiute novenentg for ne herped her understand the cleererl and I bellevee the other person or people are able to do the access lntinaeyl I am abre to see the world a }ittle sane as vell..